Follow your nose to discover the cause of Wegener's Disease

I read a really interesting article on Med Page Today that theorised that the nose holds the clues to the cause of vasculitis (including Wegener's Granulomatosis).  

Could the cause of Wegener's Granulomatosis be found in the nose?

It starts off with a lot of technical jargon but don't let that put you off; the practical implications of that science are explained later in the article. I'll summarise things here too, to make it even easier.

The research was undertaken by Peter C. Grayson, MD, head of the Vasculitis Translational Research Program, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH, in Bethesda, Md.

For many people suffering with Wegener's Disease, the first symptoms are experienced in their nose, with nosebleeds and sinus infections very common. This is one of the reasons it can be so difficult to diagnose GPA (granulomatosis with Polyangiitis), because doctor's are treating what they think is a sinus infection rather than the real cause of the problem. Many sufferers then go on to have worse symptoms such as crusting, bleeding and even the destruction of cartilage and bone.

Examining the genes of people with vasculitis to look for a cause is not a new idea, but what Grayson did was new. Instead of taking gene samples from the sufferer's blood, he took the samples from the original source - the nose.

"Increased SERPINA1 expression in nasal mucosa of patients with GPA raises the possibility of a protease-antiprotease imbalance in the nasal environment that could play a causal role in the development of GPA," Grayson and colleagues wrote.

"The study has given us a really nice list of candidate genes and ideas and pathways to pursue in future experiments," Grayson said.

Peter C. Grayson, MD

Peter C. Grayson, MD

"The observation that some of the genes we detected were related to the innate immune system suggested that there may be interactions going on between the nasal microbiome and immune cells within the nose. That's a really attractive idea for us to follow," he said in an interview.

They also plan to examine gene expression in deeper nasal tissue biopsy samples.

While this is a really interesting development, it is clear that this is not going to lead to an imminent major breakthrough. For one thing the study was very small and that could cloud the results which could be linked to rhinitis, sarcoidosis and other diseases. However, it is good to know that research is continuing into vasculitis and gives me hope that one day the cause, and ultimately a cure, may be found.

The article is called The Nose Holds the Clues in Vasculitis and you can read it here.

Image from M&R Glasgow under Creative Commons licence.

Vasculitis Symposium 2015 - 19th to the 22nd April

Vasculitis UK have announced their Vasculitis Symposium dates for 2015 as the 19th to the 22nd April. This is the 17th International Vasculitis and ANCA Workshop, and it will be held in London. 

Vasculitis UK Symposium 2015

Vasculitis UK Symposium 2015

Negotiations are currently taking place to attract some of the top international experts in the field of vasculitis to speak at this event. The format will be a mix of short presentations and discussion sessions with panels of experts.

Provisional topics being considered for presentations and discussion are:

  • Fatigue, Neuropathy and Pain Management
  • New developments in treatment, therapy and diagnostics
  • New directions in research
  • Developments in Genetic Research
  • Large vessel vasculitis (Giant Cell Arteritis and Takayasu)
  • Long term management of ANCA vasculitis
  • NHS changes - the effects on vasculitis care
  • Vasculitis in children
  • Living with long term effects of vasculitis
  • The team approach to vasculitis care: patients & professionals together
  • Vasculitis: the influence of Lifestyle and Complementary Therapies
  • Vasculitis: what is it, what causes it and where does it come from?

On Saturday 18th April, prior to the main Workshop, Vasculitis UK, together with other vasculitis organisations, will be hosting a Vasculitis Patient Symposium at the Business Design Centre. 

The Patient Symposium will be held at the Business Design Centre, 52 Upper Street, London, N1 0QH

The cost is likely to be around £60 per delegate pass. This includes a full lunch and all coffee breaks. 

If you are considering attending this prestigious event please register your interest by e-mailing: vasculitis-symposium or phone 01629- 650549.

Unfortunately I am unable to attend this event, but I will be eagerly awaiting news and information resulting from it.



Provisional Notice - Vasculitis Patient Symposium Saturday 18th April 2015


On Saturday 18th April, prior to the main Workshop, Vasculitis UK, in conjunction with several other vasculitis patient organisations, will be hosting the first UK National Vasculitis Patient Symposium.


The Patient Symposium will be held at the Business Design Centre, 52 Upper Street, London, N1 0QH

The cost is likely to be around £60 per delegate pass. This includes a full lunch and all coffee breaks.

Further details will be available shortly on the Vasculitis UK website: Meanwhile please make a note of the date of the Vasculitis Patient Symposium - Saturday 18th April 2015.

To pre-register an interest, contact .


The Future of Vasculitis Video - Part 1

I came across an interesting video today, produced by the Lauren Currie Twilight Foundation, that I thought I'd share with the Wegener's community. I previously blogged about the Lauren Currie Foundation in this post.

On the 22nd January 2015, The Lauren Currie Twilight Foundation hosted a live three part online webcast to discuss the future of Vasculitis.  The aim was to have an in-depth discussion about vasculitis and to answer such questions as - Which research studies are running for vasculitis?  Has our understanding of the disease developed? Are we closer to understanding what triggers or causes vasculitis? What improvements have been made in the last 10 years and what are the targets for the future? 

The Lauren Currie Twilight Foundation invited highly respected vasculitis experts and researchers to our webcast panels for each discussion.  The webcast panel presented and shared their own research projects’ objectives, findings, understandings and goals.  As this was a live event, viewers were free to ask questions at the end. 

The guest panel for part 1 includes Dr Alan Salama & Neil Basu.

Dr Alan Salama is a Consultant and Leader in Renal Medicine at the UCL Centre for Nephrology, Royal Free Hospital in London. Dr Salama has a specialist interest in immunological kidney disease, specifically systemic vasculitis. He runs a busy vasculitis clinic and a research laboratory investigating mechanisms of immune regulation in systemic vasculitis and glomerulonephritis.

Dr Neil Basu is a Senior Clinical Lecturer & Honorary Consultant Rheumatologist at the University of Aberdeen.  Dr Basu oversees the Aberdeen vasculitis clinic and has a specialist research interest in systemic vasculitis.  Dr Basu’s research projects have included Epidemiology of multi-system autoimmune diseases, Investigation of rheumatic fatigue and more recently, patient wellbeing studies focused around ANCA associated Vasculitis.

This webinar also provides details on research projects currently funded by The Lauren Currie Twilight Foundation and Vasculitis UK who are both actively working to improve research in vasculitis.

Due to restrictions on the video I an unable to embed it in this blog post but if you would like to watch it, please click on the link below.

I'll be sure to link to parts 2 and 3 of videos when they are published. In the meantime I'd encourage you to take a look at the other videos on the Lauren Currie Vimeo channel and check out their website.

Vasculitis foundation video interview is on Youtube

A little while ago I let you all know that Alicia did a Skype interview with Ed Becker on behalf of the Vasculitis Foundation. They have a Youtube channel called vasculitis awareness. This is how the Vasculitis Foundation explains the channel.

The purpose of this effort is to spread awareness by sharing vasculitis stories about some extraordinary people to highlight the impact these chronic conditions have on vasculitis patients and also their families, friends and loved ones. Sharing with the world, the pain, the fear, and even the joy of finally getting a diagnosis and learning what is happening to their body. When you watch these videos, you will learn that people from all walks of life are represented. There is no cure, but with your help there is hope.
— Vasculitis Foundation

There are over 70 videos on the Youtube channel and now Alicia and I are on there too. Our interview is split into two parts. The first video introduces us both and goes on to describe Alicia's initial symptoms and how the Wegener's Disease progressed.

In this video, Alicia and Barry Forshaw from the U.K. talk about the onset of symptoms that plagued Alicia. A persistent cough, runny nose, and fatigue indicated nothing more than a bad cold.

However, a more serious diagnosis was awaiting her. Alicia would soon learn that she had a rare and serious autoimmune disease called “GPA Wegener’s”.

During the initial phase of her illness, her work colleague (later to be her husband), Barry, observed the dramatic and rapid decline of her health. Although they didn’t understand vasculitis, her co-workers realized that she was fighting something extremely serious.

In this short video Barry and Alicia talk about how her life changed rapidly once she began battling vasculitis.
— Vasculitis Foundation

In the second video Alicia and I talk about building this website and writing my book.

In this video, Barry talks about how he wanted to share Alicia’s story to help awareness about vasculitis and let other patients learn through their experience.

He started with a website and eventually undertook the challenge of writing a companion book that included interviews with family, friends and doctors.

In the video, Alicia ironically describes how she had to read the book about her experiences to fill in her lost memories when she was so ill.

They also share photos of their beautiful daughter, Audrey.
— Vasculitis Foundation

Unfortunately our Skype connection wasn't optimal so Ed, who was our interviewer and editor, had to do a lot of work to get the videos up. Thanks for all your hard work Ed!

I hope you enjoy our videos, and if you do please let me know!


Register now for the Roadmap to Wellness webinar

If you've been following the Vasculitis Foundation's Roadmap to Wellness Series you might be interested to know that they will be holding their fifth webinar on Wednesday, September 24, 2014 at 3:00 p.m. – 3:45 p.m. Eastern time (USA). 

The founder and principal investigator of the Translational Program in Vasculitis, at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, which is part of the National Institutes of Health (NIH) is Dr. Peter Grayson.

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr. Grayson has led several successful clinical outcomes projects and holds a leadership role  with the Vasculitis Clinical Research Consortium (VCRC), where he also completed a fellowship. He focused on research and clinical aspects of vasculitis in that VCRC program. He serves as the representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis with the American College of Rheumatology.

His specific area of research includes biomarker discovery and development through gene expression profiling, and other genomic techniques, clinical epidemiology and immunology, disease classification, and clinical trials in vasculitis.

You can read more about the webinar on the Vasculitis Foundation website here.

If you want to participate in the webinar, you can register here via GoToMeeting.

Photograph used with permission from Charles Nadeau.